Wednesday, April 16, 2014

Hailey and her life changing surgery!

For some reason, this post has taken me forever to write (and it is long-sorry). I think its because I don't want to come off pushy or like I am asking for something. I want to share with people what is going on with my little sister Hailey and the exciting opportunity we have coming up for her-and also thank greatly the people who have put this together and contributed thus far.

I have written about my little sis Hailey before in this post. Just to catch you up-Hailey was born three months premature, and weighed just 1 pound 3 ounces. She could literally fit in the palm of your hand, my dad's wedding ring could go all the way up her arms and all the way up her legs. She was in the hospital for 381 days straight and had a lot of setbacks along the way which combined with the prematurity caused some developmental delays. She was on oxygen for four years, she can say about 15-20 words and is mostly fed through a g-tube in her stomach (although she will eat nuts and chocolate like it's her job) just not enough orally to sustain her. She has a full time aid at school, but she can walk and even run and understands a lot more than she lets on. Today, Hailey is 12 years old-she is happy, active and lovable. She loves swimming, listening to music and talking on the phone/ face-timing with all of us (her fam)

^^^So tiny and so precious

^^^She has the best smile

I think it has taken me to become a mother to truly understand how much Hailey has gone through. I was a lot younger in her hospital days and her being in the hospital was just a part of our lives at the time. Now that I have held and seen my own baby in my arms, I can't fathom him having to go through what Hailey had to when she was so so small. She had so many surgeries and scares and lived in a hospital for the first precious year of her life. I also have a new appreciation on how hard it was and still is for my parents to watch Hailey go through so much and also live in a hospital for over a year. They continue to be amazing advocates for Hailey, they are patient and do everything they can to make sure she is living a joyful life.

^^^Hailey and I 12 years ago

Here is what is going on with Hailey right now:Hailey is visually and hearing impaired. She is very far sighted
and we are told that everything appears blurry to her. Because
of her poor vision she has trouble looking at books and generalized learning is
difficult. She also has poor depth perception and so she is
very nervous going up and down stairs (she can't go up and down by
herself)and surface changes (for
example from carpet to tile or grass to cement) make her very nervous because
she can't tell the level difference. The doctors have tried many
thingsto help her eyesightand have not been successful. She hastried
glasses since she was 4 years old, but she absolutely will not keep them on her
facebecauseshe has an aversion toanythingon her face and her
head. Thismostly
stems from her prematurity and having so many negative experiences as a baby. Hailey was told that she was a perfect candidate for something called PRK eye surgery and she was put on the wait list for the surgery. The ophthalmologistat the Alberta Children’s Hospital felt like she was an excellent candidate for PRK surgery which is similar to Lasik surgery in adults. He said it could improve hervision immensely, and in turn her depth perception and future learning. We think with improved eyesight, it could help her speech, her communication and lessen some of her daily frustrations.One month before the surgery, the Canadian government banned the surgery on kids stating that there was not enough research (despite our doctor performing over 450 of these surgeries and them being very safe.) The government didn't want to pay for it anymore cough cough*So the doctor in Calgary referred Hailey to a doctor in Houston who does the surgery.

We feel very
strongly that this is something that she could benefit from and that we have to
give her every chancewe canto improve her vision and quality of
life.

That is the background and what is going on right now. She is scheduled to have the surgery on June 9th. My parents, of course do not have american health insurance and will have to pay for everything out of pocket plus travel expenses of having to be there for over a week. Since Hailey is a kid, she will also have to be put under=$$$.

Family friends of my parents (Wade and Sandy Pierson) so graciously started an online fundraiser for Hailey's surgery. My mom was in tears as she told me they started it and although hesitant to ask for help, we are so grateful. We have already seen family, friends and some people we don't even know donate money for Hailey. Myself and my family have been so humbled and so blown away by the generosity of people who care about Hailey. It seriously has made me want to be better and to pay it forward in any way I can. We really are so so grateful for any and all support.

I thought I would write this post to give people a little bit of background and information on Hailey and her surgery and to share the fundraiser with any who are able to help. If you can't give, we would love it if you would share this post or the fundraiser link with friends on facebook or other social media.

Click on the picture below to go the fundraiser page

Again, I was hesitant to write this and I hope this comes across like I hope it to.

I love Hailey so much, I have always felt so nurturing and protective over her and I like to think we share a special bond. I am so excited for her to have this life changing surgery and open up more possibilities for her!